For my divorced friends, both men and women, could you please prevent their unscientific ex-spouses from playing "catch up" with their shots and feeding them fast food out of spite?  I guess, everyone has to do what they think is right, but these part time parents do what they feel like in the course of 72 hours, and then, seeing the affects, leave town.  Of the many tragedies of autism I await daily in my inbox, this one seems particularly dark as it is a blatant attempt to use the child to hurt the parent.  Everyone suffers, most of all the child.  Physically.  Emotionally. Academically. You know the courts are relatively useless when it comes to this sort of thing.  If you can fly around the world in one night, surely you can tackle this.  

Patience. Santa, I hate to be gluttonous, but, could I get an extra helping, please?  Every time I take Noah's labs along with my dossier of studies to doctors they open the materials, sift through the pages, pat me on the shoulder and give me a soft glance meant to convey sympathy.  It's really condescension.  I ask them to have a look. A lot of compelling studies in that binder.  Times are changing.  I tell them it's like trying to keep a lid on a pot that is boiling over.  They listen to me and say  they wish I discovered all this sooner, maybe I could have gone to the VICP and gotten the justice I deserve.  Because, "...don't you know, Mrs. Goes, the VICP is designed to bring swift justice to the remarkably few families who suffer as yours does."  I explain several of my esteemed colleagues have been through the VICP, and even those who've won their cases would not agree with that statement.  The 83 Canaries would not agree with that statement. I am told I am  "understandably passionate." I explain  I am most often told that when the professional to whom I am speaking does not fully grasp the complex immunological, inflammatory and metabolic issues present within autism.  That's when they tell me our time together is over.  I ask them if they have ever reported an adverse reaction themselves as I am ushered out, but they are waving me on as they exit to have lunch with their pharmaceutical reps.  

Discernment.  While driving with Stranger Baby Liam yesterday, he asked me why The Angry Birds are so mad at the piggies. I said, "Remember?  They took their eggs and scrambled them."  He said, "Yeah, but, can't they just go to the store and get more organic eggs?" I replied, "No buddy, the eggs were their babies. Not just eggs. They were special to the birds."  Long silence.  "The piggies...scrambled...their babies?!"  "Yup." I said.  He pondered what I'd said, turned the game off and whispered, "sickos." I did NOT say, "Just like that overly sweet and unconcerned pediatrician did to your brother. Her unwillingness and inability to recognize Noah's genetic predisposition to environmental toxicity scrambled his immune system and his metabolic processing so nothing knows how to work right.  All the right messages go to all the wrong places in his brain and central nervous system."  But it was right there on the tip of my tongue. He's a smart kid, that Stranger Baby Liam. He knew it was implied. Our most frequent house guests are other activists. He soaks up every word we say (and shout) like a sponge. Clearly, in retrospect, telling him about the egg babies was TMI for a 3 year old. Please, with everything our children have going on in their lives, do not let me burden them further. 

Protection.  For my sister scientists and brother researchers and for all the other activists. For all the parents seeking health freedom and treatment for their sick children. These people have come to represent consistent, pragmatic excellence to me.  My dear friends have had their jobs threatened, their bank accounts depleted, their spouses leave them, their friends and families abandon them. As Stephen Barrett http://www.ageofautism.com/2010/01/tribune-watchdog-or-tribune-skunk-part-1.html and his pharma-financial backers systematically pick off all the good doctors one by one, state by state, it's getting harder and harder to keep the faith.  

Good Advice. I will say, despite our community's rather trying and horrific year in the press, the courts,  and public opinion in general, individual activists seem to be gaining a foothold.  Parents know they are being lied to and the increasing rigidity and lack of logic on the part of the CDC and other public health institutions has sent thinking parents to our doorsteps in droves. They listen carefully.  They actually read the science.  They watch, The Greater Good. Then they come back with this:  Well, you know, all it's going to take is for autism to happen to the kid of a really rich guy with real power and it will change everything for you guys. Uhm, no. The really rich folks with affected families know. The thing about environmental toxicity is that it does not acknowledge class barriers.  Race, creed, or color, either. Chronic dynamic encephalopathy is an equal opportunity destroyer if the genetic predisposition is present.  Rest assured,  among the privileged classes many chronically ill, ASD children exist.  But how, Santa, how do I explain to these poor seekers who have already jumped through so many hurdles to meet me halfway, that these folks value their money, power, and lifestyle more than their children? It's a stumper, I know. It tarries the line of conspiracy theory once you start explaining all the murky legislation and back door dealings, and once ya go there, ya lose 'em again! No one wants to believe that real evil exists in the comfy cozy world of moral relativity.  The great social thought train that has delivered individuals, organizations, and corporations from the burden of personal responsibility. I know you'll have to think on this so no rush if you can't have it to me by the 25th. I've grown accustomed to waiting. 

A Miracle. Noah is not well.  Which is why, as he ages and becomes increasingly verbal, it is so very hard to watch the suffering he endures everyday.  Take this morning for example.  He arose at 4:30 a.m.  He emerged from his room, stripped naked and jumped on top of the kitchen island.  He ran in place with his arms out stretched  for about 45 minutes on the ice cold granite.  As he did this, he screamed. For 45 minutes. With a house full of  sleeping people. At 4:30 in the morning. Intermittently throughout this process, he sought out my eyes, looked into my soul and said, "Stop. Please?" The sweetest lilting please, like a typical child requesting one more piece of candy. "Please Mom? May I have just one more?"  Only in Noah's case, it's "Please mom, can I get a rest?  Please mom, stop my arms and legs. I am cold.  I do want down. I don't know why I kick you in the face every time you try to get me off this thing.  Why am I doing this? I just wanted sleep this morning but my body woke up and started doing this to me. Please, make it stop." It is knowing he is there, that he is cognitively present that is often the most unbearable. We are in a holding pattern with his care, on waiting lists that discourage and depress me.  So very few physicians understand that autism is medical.  It is not the poop on the walls, the sleepless nights, or even the constant efforts at escape that will get me.  It is bearing witness to the perpetual and needless suffering of my precious and innocent child.  That, Mr. Claus will surely take it's toll upon my weak and feeble soul. Do what you can, please. I know miracles are not necessarily your specialty but a little back up can't hurt. 

Lastly, I would love a holiday week free of autism wanderings, abuse, accidental death and murder headlines.  That would truly be a Christmas to remember. Thanks for listening Santa. If you can kick down with anything on my list of  requests (paying particular attention to the miracle) I promise I will get proper thank you's out consistently. I will teach my daughter proper manners, tend to the Stranger Baby, and I will even attempt to squelch the yeller.  No guarantees on the housework.  

Best, lj

LJ Goes is Managing Partner of The Misuta Project, L.L.C and Executive Board Member of The Illinois Canary Party